Monday, June 2, 2008

Breaking the Spell

There’s been a lot of conversation at our house lately about “bad spells”. Rachel says frequently, “It’s just the bad spell,” when Xian behaves erratically or is having a bout of crying/irritability. Xian’s been talking about bad spells, too – saying “I want to break the spell,” or talking about it in her play. Last night when she was struggling to fall asleep her hands became characters (she named each hand, and one had a deep voice, too---using “voices” is another old skill that’s coming back) trying to get rid of a bad spell. Xian has mentioned more than a few times that she wants a blood test to break the spell---we are heading to the lab this morning for the Lyme test (as well as one for celiac disease---since Xian’s become gluten intolerant it’s worth ruling out) and it’s certainly my hope that we’ll get some information “about the spell”. We’ll also get Xian’s repeat abdominal x-ray while we’re at the hospital---will be curious to see what shows up there, as her belly is quite distended these days, though she’s certainly not constipated. (Yeah, I know, too much information!)

Xian’s keen interest in Disney movies has returned---she’s asking to see both “old favourites” (Beauty and the Beast, Cinderella, Mulan) and also now interested in some that were a bit too mature for her previously (e.g. The Little Mermaid – though we still need to fast forward past the seawitch scenes!).With all the viewings of these movies I can’t help but notice how often there’s mention of spells being cast and then broken, so it’s not surprising it’s become “the explanation” for what’s going on with Xian, at least from the kids’ perspective. (Heck, talking about “the bad spell” is a lot simple than the full sentence or two other explanations require, given that we don’t have anything remotely resembling a diagnosis.) And, when Xian’s symptoms are considered they really do seem spell-like – periods when she’s unable to break out of the fog that descends on her, periods when something (pain, strange sensations) grips her so firmly that all she can do is scream and fight it off. Now of course I don’t believe that Xian’s condition is caused by an encounter with a bad witch (something Xian’s talked about), but it’s looking more like an encounter with a nasty microbe or bacteria or some sort of parasite. Xian’s still having heavy night sweats and times during the day where she spikes a little fever and her colour suddenly drains. Really hoping that some of today’s results will help her doctors to pay some attention. I did send a video clip of her playing with Rachel (imaginary play with the doctor kit) to her psychiatrist, plus the name of the psychiatrist who treated the boy with Lyme, and just really hope that I’m taken seriously and not dismissed as being in denial of the autism diagnosis. If Xian really seemed autistic all of the time, I’d certainly be open to it, but I simply don’t think that she fits the diagnostic criteria. Hopefully Xian’s psychiatrist will see that, as well, but by now I’ve learned to keep my expectations pretty low when it comes to her doctors.

2 comments:

Glad she's feeling better some of the time. I just talked to my aunt. She said my other aunt (with Lyme) had to really fight to be treated. She said she felt like she couldn't go on much longer and begged and pleaded with them to start treatment even before they got test results. I don't know if she was ever officially diagnosed, but she is starting to feel like herself again slowly. Just wanted to let you know. BTW - she was treated at a lyme center in N.J. If you want her # I would be happy to give it to you. Just e-mail me.